Adaptive Exercise Equipment Legislation Introduced in North Carolina

This is a super proud advocacy moment for me!

Many of you that know me, know that I spend much of my time battling health insurance companies and helping individuals get the medically necessary durable medical equipment they need to not only survive in life but to thrive.  Over the last two years I’ve taken my mission one step further to focus on having adaptive exercise equipment for long-term wheelchair users put under a “Medical Necessity” Review under Durable Medical equipment. 

Today as it stands, under Medicare and private health insurance companies, any type of exercise equipment is considered a non-covered benefit item.  This means it does not have a code and will not get approved.  Unless you have specific laws in your state, are part of the VA, or have an “in,” you’re not going to have much luck in getting approval. I know … I’ve been fighting for an adaptive rowing machine called the Vitaglide for 2 years — With no luck I might add.  Even after writing a 35 page Letter of Medical Necessity backed up by over 130 peer reviewed journal articles, which took me 4 months to research & write, I was treading water.

Despite my 24 month herculean effort I still failed.

Step 2

I then decided to take my mission to Blue Cross and Blue Shield directly.  Through a series of internal contacts and help from the North Carolina Department of Insurance I started working with multiple policy directors.  I gave speeches, had zoom calls, created videos, and more.  This was a four tedious process trying to make a financial and medical argument for preventative healthcare for adaptive exercise equipment for long-term wheelchair users to be reclassified.  Honestly, this epically failed and several months ago I received a beautiful blow-off letter from Blue Cross and Blue Shield.  No bites.  You can see the attached letter yourself.

Step 3

Have no fear.  I was working behind the scenes with my North Carolina State Senator Jay Chauduri on this very issue.  In May 2020 we finally introduced legislation trying to mandate health insurance companies to put adaptive exercise equipment for long-term wheelchair users under a medical necessity review.  Very proud of this accomplishment.  However, I’m acutely and painfully aware, I might add, the success of this bill is slim to none.  However, this creates a beginning legislative track record for me.  I am now working on different plans over the next nine months to introduce more legislation.

It’s going to be a very long road, I’ve heaved advice from so many around the country, but I’m also kind of a one woman show on this front.  I just keep pushing and pushing and pushing.  I’m ridiculously determined, pleasantly persistent, and will continue down this road is long as there is someone to listen to me.

I simply won’t stop.  I don’t know how to give up.  I never have.  As Winston Churchill famously quoted “The Definition of Success is Moving from Failure to Failure without Lack of Enthusiasm.”  I live by this quote on a daily basis living with a long-term severe physical disability.

Change can start with one person.  You may not be able to affect national change by yourself, but you can ignite that spark in others, create a movement, and while you may not accomplish what you would like to in a year or two or 10 — I have no doubt I will ignite a spark in the younger generations to continue my work for many years to come!

Online Wheelchair Dating Tips

“ONLINE WHEELCHAIR DATING TIPS”

New YouTube episode out now – My dating life in a wheelchair as a C6 quadriplegic

Talking to you today about disability dating. Specifically, online dating tips I’ve used as a woman in a wheelchair and a C6 quadriplegic. Dating is challenging no matter who you are, but online dating is even more daunting – now online dating with a disability presents its own unique set of challenges! Several years ago before I got married I went on a giant dating experiment. I was facing a major surgery for a pressure sore I had and I had about five months to go before my 11th surgery.

I decided, quite truthfully, to just try and sleep with as many men as I could to explore my disability and sexuality. I probably should not be writing about this online or making a video, but this is my reality.

It took me 5 years to gain the courage to even start dating after my accident when I broke my neck in a shallow water diving accident in 2010 leaving me paralyzed from the chest down with limited hand mobility. Throughout my dating adventures I ran into all kinds of strange people, great people, and some guys who simply were curious about what it was like to sleep and/or date a woman in a wheelchair.

I have a very quirky sense of humor, so I created an Excel spreadsheet to monitor my success for online dating. I have been through it all. Hopefully some of what I have been through you will not experience, but I was on an experiment in the name of research! specifically, disability dating research! Even through my failures and successes I learned so much. Let me take you on a journey of some of my dating mishaps and wonderful successes!

JOINT CUSTODY (A Multi-Year Settlement Agreement)

Pain.  Chronic pain.  It’s no joke.  It’s debilitating.  It can lead to death.  It can be physically and psychologically crushing to your soul.  Living with physical paralysis, for me, pales in comparison to pain.  If asked that “What If” question whether I would prefer to live in chronic pain or be paralyzed, at this moment as I write this article – I choose paralysis.  This is a pretty powerful statement if you think about it.  I am essentially choosing to practically go broke, have people’s hands in my body all day long, have someone dress me, use catheters and suppositories, etc.  Think about what I am saying. 

This is how debilitating my chronic pain is.  For anyone who lives in chronic pain, your life has been undoubtedly changed forever.  I know mine has. 

When I was living in the ICU after breaking my neck in 2010, I was one of the unlucky ones who also simultaneously suffered a very deep pressure sore on my behind, pulmonary embolisms, and died a few times.  I thought “this was the worst of it” to myself.  Wow, was I in for a rude awakening 3 weeks after my accident!

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A CRUSHING DEFEAT – BLUE CROSS AND BLUE SHIELD – CREATING A RIPPLE EFFECT

You work so hard for so long on a specific project only to have it practically blow up in your face.  I’ve been working with Blue Cross and Blue Shield policy directors for the last six months and I recently received beautiful “BS” letter as they say stating that my efforts to have adaptive exercise equipment reviewed under medical necessity was not going to be an option.

I have tried to play nice, it did not work, and that’s okay.  I’ve simultaneously been working on legislation on multiple fronts to be introduced over the next few months and few years from different angles.  I always try the path of least resistance first, this does not always work out, but it does not deter me either.

If you’ve been following my health insurance battles you will want to take a close read of this one because my entire disability advocacy career started out with health insurance equity.  It is naturally a passion project near and dear to my heart and one which I will continue to fight for on so many fronts.  What will ultimately end up happening is having to create a coalition of seriously smart lawyers, doctors, advocates, etc. in years to come.  This mission is going to be measured in many years, not months.

Fortunately, my spinal cord injury has taught me the definition of extreme patience.  For this I am thankful!

I may Sisyphus rolling the boulder up the mountain only for it to come crashing down on me.  However, I will start rolling the boulder back up the mountain in real time!  I will break the cycle eventually in the name of HEALTH EQUITY, and not just Health Equality.

Check out the Article on Push Living Magazine:

A CRUSHING DEFEAT – BLUE CROSS AND BLUE SHIELD – CREATING A RIPPLE EFFECT

Caregiving & Sexuality

Very cool podcast I was part of that offers a very unique perspective on how many of us with disabilities approach the conversations with our caregivers when we want to be intimate with a new person in our life, and how we handle those conversations.

Probably not something you think much about, but it’s an important topic that constantly gets pushed aside and is left unrecognized!

I personally have had a lot of really interesting experiences and conversations when I was engaged in the dating part of my life prior to getting married. Some wild conversations for sure 😉

#disabilitylife #relationships #disability #sexuality #disabilityinclusion #caregiversupport #caregiver #caregiving #disabilitysexuality #openconcept #disabilitylife #perspectiveiseverything #perspectiveshift

A Life Through the Lens of Dark Humor

The absurdity of spinal cord injury with respect to the fact that being paralyzed is oftentimes the least of your challenges as compared to the endless secondary medical complications, caregiving challenges, financial burdens, to name a few, can turn a perfectly sane individual into one who is tinkering on the edge of insanity.  The question remains is how do so many of us with these life altering changes cope with, what can only be described at times, as a revolving circus carnival of animals? 

We each develop and build upon our own coping mechanisms as the year’s progress and as we become a little bit older and wiser in spinal cord injury years.  For me, dark humor is, bar none, my number one savior to get me through most days.

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The Never Ending Health Insurance Battle – A Year Later!

If you’ve ever applied to college you’ll likely remember waiting anxiously by the mailbox for that large envelope, which was filled with hopes and dreams of your acceptance letter into the school of your choice.  The small envelope on the other hand, filled with dread and disappointment, meant that you were likely going to have to fall back on your Plan B School.

As the years roll by and you grow up that distant memory of the large envelope stays with you.  It certainly stayed with me.  Over the last several years after fighting health insurance battle after health insurance battle I quickly came to realize the large envelope in your mailbox was the one filled with despair, rejection, and disappointment.  I dread that big envelope in my mailbox that has Blue Cross and Blue Shield labeled in the top right corner.

Over the past several months I’ve been tirelessly working on two major insurance battles, which has taken my every waking moment to push forward on while simultaneously building up my disability advocacy career from every angle I could think of. Every day as I would roll down to the mailbox my throat would get a little bit tight, my blood pressure would start climbing, heart racing, and as I was watching whoever was helping me open the mailbox that day turn the key I waited in eager anticipation for either the small envelope or the large envelope.

he last two battles I’ve been fighting have been for the VitaGlide, an adapted physical exercise rowing machine, and a total hospital electrical bed.  Blue Cross and Blue Shield had initially rejected both requests.  The total hospital electrical bed was rejected on the grounds that it was not medically necessary and the VitaGlide on the grounds that it was a non-covered benefit.  I’ll explain the difference in a moment, but I’ll start out by saying when you are rejected on the basis of something not being medically necessary you have many more avenues to pursue for appeals than you do if you get rejected because an item is a non-covered benefit under your insurance plan.

Let me tell you my story … on PushLiving Magazine: https://pushliving.com/the-never-ending-health-insurance-battle-a-year-later/

Never, Never, Never Give up – Even When Health Insurance Denies You

It’s hard to believe that it’s only the middle of February and with the state of affairs in the world today I try very hard to focus my energy on affecting change in whatever capacity I am able to in order to bring a little bit of light into this world.  I’ve said this time and time again, but kindness, positivity, and perseverance go a long way in my book.

I would be a hypocrite if I didn’t attempt to put actions to my words.  So, I have made quick work of focusing on two new Blue Cross and Blue Shield cases, which I believe are so important for so many who are disabled. 

My overarching mission in these constant insurance battles is not to just simply win “stuff” from insurance companies, but rather to strategically attain medically necessary durable medical equipment that not only improves the quality of so many people’s lives, including my own, but our independence and dignity.

The challenge lies in that many of our health insurance policies are simply outdated and many of them do not factor in the special needs for those who are severely disabled.  With that said, it is my goal to create a host of documents with letters of medical necessity written, so patients can just hand them to their doctors and fill in the necessary personal information. 

I’m working to change the system from the inside out, but in the meantime many of us really need to learn how to operate and navigate within the broken system we are currently faced with.  It’s not easy and most people don’t have the time, energy, or know-how to get things accomplished.  Unfortunately, many people just take their insurance policy at its word and don’t test the system. 

Change does not come from blind compliance!

We have to push the boundaries because we are, the disabled community, a very much forgotten about segment of the population in the eyes of health insurance policies.

Read the rest on: Push Living Magazine — https://pushliving.com/never-never-never-give-up-even-when-health-insurance-denies-you/